Notes on the journey I didn't plan to take... Motherhood, Melanoma, and making it to my Maserati

Thursday, June 9, 2016

Gastroenterologist: To Be, or Not to Be?

That IS the question. More like... My relationship with the Gastroenterologist... will there be one? or not. Frankly, I'm still leaning toward NOT.

I have had a busy week of medical appointments to start the month of June. Two trips to Toronto and plenty of anxiety, dread, and confliction. I await results from the two rounds of bloodwork I had on Monday, as well as the routine head to thigh CT scans I had also at Sunnybrook on Monday.

I haven't been feeling well, physically or mentally; CT scan drink plus contrast dye IV typically provide me a couple of days of tummy trouble and fatigue, and this time I have been in and out of a low-grade fever as well. It's stupid - I hate it! *stomping my feet in tantrum* I was a good girl though, and rushed to my family physician immediately on Tuesday after Monday's Toronto trek. Family Doc has note of all of my experience and will be in touch upon receiving my test results.

Part of my family Dr. de-briefing on Tuesday included an update on the Gastro situation.

Quick re-cap: along the course of my ipilimumab (immunotherapy) treatments on clinical trial August 2014 through September 2015, I received some damage to my intestinal tract, and it presented itself for a while as some pretty persistent need to stay close to a bathroom. (I am still squeamish about using the word diarrhea on my blog but I digress...) 20-ish% chance of getting colitis from these treatments, as I was aware when I signed the paperwork to become a fortunate guinea pig recipient of a drug that could "cure" my melanoma. As chance would have it, I am dangerously close to a diagnosis of ulcerative colitis, but I am fighting it all the way.

In March I met with a Naturopath to get a 2nd opinion (3rd..4th..), in preparation for my meeting with a Gastroenterologist at Sunnybrook. We decided that I should begin taking 50-billion multi-strain probiotics every night. So I did. Most nights before bed I have taken four capsules of a reputable Canadian-made 12-strain probiotic and ...drumroll please... my tummy has vastly improved. Not perfect, still have a random day or two per week surprise dash to the bathroom, but it is nothing like the exhausting daily struggle I was having.

My medical oncologist is worried about said tummy trouble, and strongly encouraged me to have a colonoscopy, to assess the damage done by our beloved pacmen. I refused scope without first having a consultation with the Gastro (which has made Onc slap my wrists - but I wanted to try the probiotics first! Not to mention I am only 8 months post-treatment so it is reasonable to expect my body will need time to heal). Finally last week I had a consultation with the newest member of my medical team.

Interesting gentleman, quite close to retirement but still going strong, with a waiting room full of patients wanting his help with their varied experiences with Crohns and Colitis. He gave me a quick run-down on the most common causes of diarrhea (high-fibre foods, dairy, caffeine, gluten, alcohol) (most of those I already avoid...except..um of course the alcohol), and ran over the statistics of possible risks my intestines could face during and after a scope. (ick)

I informed him that in the time that I had been waiting for my consultation with him, my tummy was much better, and told him about the probiotics (which is the only thing I have changed in my diet since March).

He gave me a haughty explanation of how a probiotic wouldn't work as it is an unregulated natural product that is a shot in the dark very unlikely to affect my immunotherapy-induced inflammation. "Just as we wouldn't treat an infection with the wrong type of ANTIbiotic, we couldn't expect one PRObiotic to help if we don't know what the exact problem is." (but I am taking a 12-strain probiotic. I kept quiet as I would have appeared to be arguing)

He also said I should not use the refrigerated probiotics found in a health food store, that I could catch some worse bug from a faulty bacteria floating around in the probiotics. He said I should seek out a pharmaceutical brand in a drug store. Really. Hhmmm that goes against everything I know about probiotics.

He suggested that I stop taking the probiotics altogether for a week, and if the diarrhea flares up then take the probiotics again and it if stops then he would say I am the ONE person that works for. *huff*

I asked him if the scope would show damage done last year, and if yes, would the only cure be to take prednisone? Because if so I could save him some time as I will NOT be taking prednisone. He puffed up and said "WHY NOT? Prednisone is man's best friend!" I gaped in disbelief as he went on to ask me if I was saying that if I was lying on my deathbed from diarrhea would I refuse to take prednisone and just agree to die? I said NO, but I am not in that situation right now! Aarrghhh

I asked for help to understand how immunotherapy had damaged my digestive system, and if it can heal itself with time (and/or probiotics, which I didn't mention again), and he said well Dear, I don't know. "These immunotherapy drugs are all new territory for us and we don'tknow."

Well that's what I needed to know! I had refused scope appointments because I wanted to hear that - ARE we going to find anything concrete out from a scope? Because if my tummy is feeling better and I am managing it on my own then WHY undergo another invasive medical procedure? I'm all for being a guinea pig, but I draw the line at some tests that are costly to the medical system and to my own mental and physical well-being.

I say that at the risk of offending my wonderful Medical Oncologist, the Boss. She was adamant that I have this test, and I am still considering that I will, if for the purpose of her research. Or if I have another flare-up. I was planning to speak to her about that in our appointment on Monday, but she wasn't there, so I escaped the slap on the wrist I am sure I am going to receive.

Her stand-in happened to be the lovely Dr. I met at the Queen's Park event, and I filled her in on the situation. She said she would relay my experience to my Dr. and have her call me upon her return from the melanoma conference in Chicago.

I have mentioned before that I am amazed at the amount of self-advocacy a patient has to do in order to find balance in a complicated medical situation. I know that I risk offending my Oncologist by refusing the scope, and I am not doing it out of disrespect, I am simply following my gut feelings ..oops, pun not intended. I just want to get over all of this stuff and move on with my life. Isn't that what I'm supposed to be doing?? Yes, I am stomping my feet in tantrum again. I am incorrigible.

So.... I relayed all of this to my ever-calm family practitioner and she agreed that is is completely acceptable to wait it out and see what happens. She agrees with myself and the Naturopath about the probiotics, and encouraged me to continue as I have been. If my tummy trouble persists or flares up, we will cross that bridge then. And I will have the scope, but closer to home, with a copy of the report to go to my team at Sunnybrook.

The Gastro also left it with me to call back if I want a scope or another appointment, but until then I am free to go... he did not consider a scope urgent, especially after my report that things have improved since the winter. Perhaps we will meet again, perhaps we will not.

More about Me:

I am a 41-year old mother of identical twin teenagers. Daughters! As if that's not enough, I am battling cancer: Stage IIIb nodular melanoma AND stage III papillary thyroid cancer, both "in remission" at this time. I have had several surgeries and intense medical treatments, and I remain under "heavy surveillance" as my Oncologists like to call it.

Sharing my experience online helps my family and I cope with this roller coaster ride in a brutally honest and often comical way. I hope it will help others as well! Join the discussion ~ comments, questions, and advice welcome!